Moms of Epilepsy
Denise – Mother of Jonathan
Tuesday, November 20, 2012: a day that started as almost any other and then become the day life forever changed in our household.
Back in November 2012 I was a busy wife and mom to three children. I got the kids ready for the day and then ran off to work. I work in a hospital in finance and at that time my office overlooked the parking garage for the ambulance. I would frequently note when the ambulance left and think, "I wonder how this call for the ambulance has just changed someone's day." I was just settling back into work shortly after 1:00 pm when I happened to take note of the ambulance leaving the garage at about the same time as my phone rang. It was the secretary from my son's high school telling me my son Jonathan was having a seizure and I needed to come immediately. I bolted from my desk and ran for the door calling out that Jonathan was having a seizure and I needed to go. Little did I know that the ambulance I had noticed leaving was the same ambulance dispatched to the high school as the school called 911 and then me. An office colleague immediately followed and said she would drive me. I gave her my keys and off we were. Looking back, I am amazed that she was right there as I truly don't know if I would have been able to drive.
That day was the beginning of what is now a 3½ year journey with epilepsy. After countless MRIs, CT scans, blood tests and medication trials we were told that we had tapped out the resources available to us in Manitoba. (We live in a small town close to Winnipeg.) We were referred to Montreal Neurological Hospital for further investigation. Jonathan has now been an inpatient for testing and trials in Montreal in March and in June of 2015. We anticipate going again during the summer of 2016 for an invasive EEG evaluation. The medical staff believe that Jonathan has a left hemispheric epileptic generator and his seizures are not very responsive to medication.
Since Jonathan's initial diagnosis, we have felt very strongly that educating others is the only way to raise awareness and to end the stigma surrounding epilepsy. We, as a family, and especially Jonathan are open to sharing our real life stories and asking people to support epilepsy research. We try to bring awareness to what epilepsy is and what epilepsy is not! Dispelling myths and old wives tales are part of many conversations with family, friends and colleagues.
Being the Mom in all of this has been difficult. Most mothers will identify with a mother's heart and understand how hard it is to watch your child struggle. To watch Jonathan struggle has probably been one of the most painful things I have ever had to do. How I wish I could just take this from him. How I wish that I could just find enough money to make it better. How I wish he could live a "normal" life. How I wish ... you understand.
We continue to look for a solution to help control Jonathan's seizures. For now, they have been somewhat reduced with multiple medications. It's not the answer, but it's a start.
I don't know how we would be managing if it wasn't for our faith, along with supportive family, friends and employers. The struggle is great for the individual going through the seizures and for the family walking alongside. It really is a family thing. We are all on heightened alert for any unusual noises or a crash somewhere in the house. We all know what to do when Jonathan has a seizure. We all hope the last seizure will be his last. We carry on with anticipation that his miracle will come. We look forward to researchers finding the cure. We cheer on all epilepsy warriors as they fight on.
I right now just want to say to the moms ... I understand. It hurts, but we soldier on. We are the moms of epilepsy. We share a dream and I pray the dream comes true for your child and for mine.
Denise Hoeppner
Altona, Manitoba
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